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Wednesday, May 16, 2012

Up until yesterday, I had never, ever heard a woman--a mother-- state that she wished she had aborted a child to whom she had already given birth. I honestly thought I never would. What's the saying? "You never regret the kids you have, only the ones you didn't have." I guess I was naive enough to believe that the act of holding, kissing, soothing a child was enough to erase the doubts and plant a seed of love and yes, even gratitude.

But I was wrong. There actually are people in this world for whom the act of being entrusted with a life -- no matter how small or fragile-- brings nothing but anger, hostility, and in the end, bitterness.

Driving to Seattle Children's Hospital yesterday morning, I heard a story on NPR about bills being considered in several states that would ban "wrongful birth" lawsuits. The upshot is that parents rely on testing --sometimes routine, sometimes extensive--to determine the health and well-being of their unborn baby. When that testing isn't offered, when the results aren't conclusive, or when the information somehow gets lost in translation, a select few parents have decided that the "negative outcome" (i.e., a baby with issues they weren't expecting) is worth suing over.

Clearly, all of this is wrapped in an untidy package with abortion laws. Because really, what people are saying here is that they want to know what might be wrong with their baby "so that, you know, we can, ummm .... well, we can decide if we can .... you know ... we can look at how it would impact our family and ... well, you know...."

Yeah, we know. But you wouldn't say it, right? Because even the most abortion-rights people I know have never looked me in the eye and said, "Oh, I'd want to know. Because I would abort that baby in an instant."

At the core, we're still PC about it, even if deep down, we suspect that learning about a baby with a catastrophic disability or an abbreviated life span would rock us to the core and bring us to the place where we'd ask ourselves: Can I do this?

But apparently, not everyone wrestles with life and its inherent value. Some people have it all figured out. And those with little more capacity than breath and involuntary motion, well ... they're not fit to consume resources--or tax my emotional ones. Because really, that's what it's all about, isn't it? What we can handle. What we can allow. What we can make room for in our already crowded lives.

The waiting area for the specialty clinics at Seattle Children's is a hive of activity. Children in wheelchairs, children in walkers, children with cochlear implants, children missing limbs, children unable to breathe without assistance, children unable to walk to happy to crawl from one area to the next, even if it means dragging a leg that refuses to cooperate. There are stunned mothers of newborns huddled in corners and drinking it all in while praying that the test they're about to sit through never, ever brings them back here again. There are old hands who seem to know everyone. There are moms who are so accustomed to the wails of an autistic child that they can soothe their son or daughter and still carry on a conversation.

There, in our usual corner by the yellow door, Oliver and I examined the gears mounted on the wall and experimented with turning them left, then right, then left again. A few minutes into our wait, a mother pushed an oversized, bulky wheelchair into our corner.

"Can we share the gears with you?" she asked with a sweet southern accent, and Oli and I scooted over a bit to make viewing room for the girl carefully tucked into the chair. Her hair was black and cut short to make it easier to clean certain ports in the back of her skull. Her chin was twisted into a permanent, slightly askew grin. And her eyes were a dazzling, bright shade of green.

Within moments, the mother and I were talking neurodevelopment, while Oli continued to spin gears faster, faster, faster. A few moments later, as we were bonding over the value of therapy that focuses on processing rather than mechanics, we heard a laugh. It was a sweet, melodious child's laugh--the kind that you imagine when you think of little girls and baskets full of puppies. It was coming from my new friend's daughter.

"Oh, she likes you, Oliver! You are making her happy!" the woman beamed.

Oli beamed right back. Oli knows "happy." He drew his forefingers to the corners of his mouth and made a huge, exaggerated grin.

"He happy? Me? Me make him happy?" he asked. (Everyone is a "he" in Oli's world.)

"Yes! You're making her so happy!" I encouraged.

Oli was delighted, and took this little girl's happiness on as his very own task. He threw himself into spinning gears, tickling her arm, and making daring pratfalls in the little enclosed space we four occupied. We moms kept talking. She shared about straining her back muscles lifting her sweet, immobile girl. About the fear that comes every time seizure meds have to be tinkered with. About how her younger kids decorated their big sister's wheelchair for her recent 10th birthday. I told her about Oli falling behind his younger brother, about his newfound skill of drawing lollipop people, about how there's so much that we just don't know.

When our beeper summoned us to our door, it was time to go. I thanked my friend for a beautiful chat, and encouraged Oli to tell his new friend goodbye.

"I kiss him?" Oli asked. With permission, I hoisted him onto my hip so that he could place a very careful peck on one smooth, white cheek. The little girl laughed again, and so did Oli.

As I got ready to walk away, I thanked God for reaching down. A warm peace had descended on me the moment that the woman and her daughter came to our little corner of the waiting area and had replaced the coldness I had felt listening to another woman, another mother of a profoundly disabled child, describe how she wished she had aborted her child before he had been born.

I don't know the pain of giving birth to a child whose life will be measured in medical procedures and pain. I don't know what it costs to stay up all night for weeks on end, to live in a hospital for months, to hear things like, "It's the best we can do." I don't imagine that it's easy, or comfortable, or that it is on par with the kind of minor difficulties I've seen in my life. All I have is right here in front of me--the path of a woman who blundered into special needs parenting by falling in love with a little boy who needed a Momma. But I can say this: even on the worst days, even on the days that bring me to my knees with frustration, even when I consider a future so full of uncertainty, I never wish that my son had never been born. I never think of him as too much, or too little. Instead, I think of the line Julia Roberts' character uses in one of my favorite movies, Steel Magnolias: I would rather have thirty minutes of wonderful than a lifetime of nothing special.

Friday, May 11, 2012

The appointment went well. So much confirmation that I am not crazy, I nearly fell on my knees thanking God for the opportunity to talk to a knowledgeable person in this area.

Making a birdfeeder

After an hour-long question-and-answer/counseling session, Seven was examined and got to donate a couple of vials of blood for the cause. Like the trooper she is, she didn't even whimper during the needle part, but instead snaked her free arm up to pat my cheek and locked eyes with Logan, who was cheering her on. She got a milkshake on the way home in honor of her bravery. (Note for anyone else with a plastic-sensitive kid: keep clean canning jars with holes punched in the lids and a supply of paper straws in your car, because NO ONE carries plastic-free serving stuff.)

So now we wait. We wait for a picture filled in with color where before there was only an outline. We're looking for "background" allergies, other sensitivities, anything that might be exacerbating this whole plastic issue.

We wait for some feedback, too, on how we're doing keeping the toxins at bay in our little girl's life. All of this will, by the will of God, give me room to breathe a little more freely when I see Seven head for a slide (always plastic), receive an invite to play at someone else's house (Playskool! Little Tykes! Step One!), or find that one of the bigger boys has inadvertently handed the toddler a frisbee. Our hope is that by minimizing contact we can keep her overall exposure to reasonable levels (whatever those are) and not have to sweat it as much in uncontrolled situations.

That's the hope, at least.

We'll see what the report card says. Maybe there's something else lurking there, combining with the plastics to hobble our little girl's immune system. Maybe it's something relatively easy (you have no idea what I'd give to have it be something like eggs or dairy). Maybe it's something that I don't even want to ponder; the allergist threw out cedar as a potential issue, and I nearly swooned. Do you have any idea how hard it would be to deal with an allergy to cedar in Western Washington?!?!

Monday, May 7, 2012

Tomorrow, I get to load Seven into the van and head to the office of someone who decided at some point to make a life out of the unusual. He's a specialist--an allergist who works only with very specific, very off-the-beaten-path sensitivities. Honestly, I feel blessed that he's so close and so accessible. For the hundredth time in our marriage, I am also so, so thankful that Mr. Blandings learned how to negotiate health care benefits as part of his employment package.

"I'm at a loss but, well, there's this one guy," the doctor said, "He sees people with the more uncommon allergies--metals, scents, chemicals, the stuff that is innocuous to the population at large. You could try him, but ..."

See, there's no 'but.' It's my daughter, it's scary, and you know, it's not about the money or the distance.

Because yes, plenty of people have pooh-poohed this situation. Family members have been the worst, to be honest. I'm assuming that they just don't get it. Heck--I wouldn't get it if I hadn't seen it. But watching an angry, red flare spread across your daughter's lips and cheeks within minutes of her mouthing a wiffle ball will make you a believer. Having to explain to people that the scarlet welts on your toddler's neck are from leaning over on a plastic picnic bench will make you a believer.

So we're heading to the specialist. Praying for good news, wise direction, and a toolbox of coping skills for navigating this big old scary plastic world. Pray for us, will you?

Wednesday, May 2, 2012

The woman was (understandably) impressed. After all, she'd seen Jo for years in the context of church life. She'd seen her navigate through some sticky peer relationships, meander through the most gangly season, and come out on the other side. And now, she'd just watched Jo gracefully make a potty run with a squirming, hopping Mani so that I could keep Oli in his happy place on my hip, swaying and humming, with his head covered to keep out the overly bright lights of the grocery store.

"I so need to hire you!" she announced, patting her bulging abdomen, "I'm getting too big to chase my 2 year-old around for a diaper change, and I can barely lean over him on the floor to do it anyhow. Maybe you can come and help out a couple of days a week."

"Ummm ..." blushed Jo, "I don't change diapers."

"You don't?"

"I mean, I have. A couple of times. Maybe ... four times?" Jo looked to me for confirmation. I shrugged.

"How do you have all these little brothers and sisters and not know how to change diapers?" asked the incredulous woman.

It was Jo's turn to shrug. "My mom changes them."

My name is Mary Grace. I have seven kids. I have a teenage daughter at home and no, she doesn't change diapers.

Large family myth #1: BUSTED.

Jo doesn't change diapers. The handful of times that she has, it's been when a babysitter was here for the day or evening and needed a hand.

Did you catch that? "A babysitter was here ..."

Large family myth #2: The older kids are always left in charge of the younger ones. BUSTED.

Every class of family (large, small, medium, homeschooling, adoptive, public schooling, dual-income, single-parent, you name it) has a stereotype. And yes, a lot of those stereotypes have roots in reality. I've never seen a family with two children employ the buddy system, for instance. But for every myth, for every stereotype-- well, there are always people who just don't fit the mold.

Like teen girls with five younger siblings who don't change diapers.

Scan the internet, and you'll unearth countless assumptions that are made about "people like me." According to the stereotype, I am a habitual collector of children who is at the beck and call of a semi-abusive husband. I can't think for myself, don't value education, and spend my days making sure that my children are robots who toe the party line while I bark commands at my older kids to keep the younger ones under control. My teen daughter is responsible for meals, laundry, and childcare and has no hope of ever going to college.

Well, either that, or I'm a tireless saint who croons nothing but Scripture as gentle reproof over my near-perfect offspring--when I'm not teaching my newborns how to read, that is. My strong, manly husband leads our steadfast and highly academic crew in nightly sing-alongs. Unless we're opening our home to the disenfranchised and poor of society or sponsoring the biannual Latin Quiz Bowl in our living room, that is.

In truth, I'm neither slug nor saint. I'm not under my husband's thumb so much as standing firmly by, doing my best to show him how grateful I am for the boundless love he pours out on me. And I'm certainly not raising robots ... unless you count the fact that Oli loves to dance like a robot. In that case: yes, I am raising a robot.

I bake my own bread, but I also buy a reasonable bit from the store. (I have to admit that I only buy the stuff that's whole grain and without hfcs, though. That probably drops my street cred.)

I don't use textbooks.

I do have family stickers on the back of my white 12-passenger van.

I can't imagine living by the "Managers of Their Homes" schedule.

My kids do AWANA.

It's a rare day when one of my olders gets a younger dressed.

Stereotypes often have their toes dipped in truth (we actually do sing together for family worship), but often the waters of reality run far deeper than we see on the surface. Not all large families are like the Duggars, the Bateses, the Whoever You Think is Amazing/Terribles. We all have our own motivations, our own convictions, our own paths.

Just like every other family.

Just like yours.

So hey, let's make a deal. I promise not to assume that you think Disney movies are the devil's handiwork if you promise not to assume that I've read anything by the Pearls. How's that? :-)

Tuesday, May 1, 2012

Every Day of Rest you wake up, have breakfast, shower, get dressed, head out the door.

You drive to church, greet friends, worship, learn, say goodbye to friends, then pile back into the vehicle just in time to cue the whines of the littlest people in your house: "I'm huuuuuuungry!"

Then it's run in the door, feed the people, scramble for naps, and ...

By the time the house is somewhat settled, you feel, well, less than rested.

You want to have a day of rest? Want to be a hero in your kids' eyes? Want to remember what Sabbath is supposed to mean?

Savor it.

The night before, ask your hubby if he's up for a park outing post-service. Depending on his personality, he may either look at you like you've grown a third eye, or shrug his shoulders and say, "Why not?" If he's game at all, put yourself into prep mode. Trust me. Do the legwork the night before, and you will enjoy this day like no other.

First, pick a spot. A park you all love? A hiking locale that you've always wanted to try out? A lake where you can lounge?

Then, pack a fuss-free lunch. Keep it simple; one dish that everyone can partake of is the easiest, in my opinion. I always opt for taco salad, because it's one of our faves and requires very little in the way of prep, toting, or serving. Some chopped lettuce in a bag, lidded bowls of seasoned black beans, diced tomatoes, corn, and shredded cheddar packed into a cooler alongside a massive bag of tortilla chips and some paper bowls and we're good to go.

Next, police the church clothes. You want to be presentable in the fellowship hall but comfortable on the playing field. That can take some doing, so think ahead.

Finally, toss some wiffle balls & bats, soccer balls, or whatever your family's favorite group sports require into a pile. If you're really good, you can even sneak the cooler & toys to the back of the van without anyone noticing and keep the surprise element intact up until the last moment.

Trust me--this one is worth the night of planning. Your husband will thank you for the break from the typical rat race, your children will think you're amazing, and you'll have at least one "Life is beautiful" sigh in the course of the afternoon. Guaranteed.